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ocular or retinal migraines without headache multiples times a day

Hi there, I have been diagnosed as having retinal or ocular migraines without headache. I am your typical 'had nasty migraines with aura in adolescence then went to aura with mild headache in adulthood.' since 2012, I have been seeing splodges of light in the centre of my vision when I come into a low light area from a brighter lit area, this has increased to everyday for the last couple of years. It doesn't happen every time, but it can happen up to 6 times in a day. They last mostly around 1 min, or up to 2.5 mins. They don't impair my vision. I never thought these were to do with migraine because the splodges are nothing like normal aura. Sometimes the spots themselves range from 6 to 20. They aren't huge either. I have very healthy eyes. I haven't found anyone else who has these spots. I'm grateful they aren't the aura I usually get because those ones leave me feeling pretty funky for a couple of days due to them stemming from the brain. I would love to know if there is anyone else out there that has these...I'm still a little confused as to whether they are retinal or ocular, because I see them in both eyes, but the doctor said mine stem from my retina??? and retinal ones only happen in one eye...maybe he didn't read that they were in both eyes??

  1. kirstenjames, I don't have this exact same problem, but I'm curious how the spots can't help but impair your vision if they are in the middle(?). I have dealt with my vision losing focus in the middle of my vision (like a big vaseline smudge or fog in the center) and I won't be able to read or see out except on the sides. Like yours, mine go away after about 5 or 10 minutes, but then I'm slammed with a killer migraine. I also get bright shards of yellow glass that will shoot across my vision from right to left, totally blinding me in 2 seconds. These last longer, closer to 15 minutes and the migraine that immediately follows is much, much worse. Unfortunately I have to just wait until my vision returns before I can even locate my medication. I'm opposite of you because I had no auras as a child or teen, but started getting twinkle lights at the bottom of my vision after 50. The big auras didn't start until after reaching 65. I've never been diagnosed in detail like some people say. I've only been told that I have chronic migraine with auras, hitting 20-27 days per month. Thankfully most are without the visual auras and instead my most common aura is AIWS which are perception disruptions. Those are a lot of fun though because you never know what's going to happen. Well, that is until the migraine hits. Lol.

    1. Thanks for connecting about this topic, Annzie. I shared a resource with kirsten that you might find of interest as well- it's a link to various pieces we have in which community members have shared on this topic- take a look if you're interested:
      Thinking of you- Holly ( team).

  2. Hi there,
    I'm sorry you have to deal with migraines later in life. Your auras sound intense, I've never heard of AIWS auras. I'll look them up. My spots are nothing like any migraine aura I have seen. The spots aren't very bright or large. They are similar to the ones you see when you you get those blobs of light in your eyes when you look directly at bright lights, those little green splodges that go away eventually. That's why they don't impair my vision.

    1. Hi there- thanks so much for reaching out about this. Im sorry to hear you are struggling with this challenge. Sounds like you have consulted with your doctor and had your eyes checked which is the first thing we would recommend. Short of that, here's some of the resources we have on the topic of ocular and retinal migraine as well as various articles written by other community members who describe somewhat similar issues. It doesn't sound like you are alone in this:

      Hope you find these resources helpful. Please let us know what other questions you have and know we are here for you. If you continue having concerns we'd encourage you to reach back out to your doctor or consult with a migraine specialist if you haven't already done so. Warmly, Holly ( team).

      1. Hi Holly, thanks for your reply and the links. I'm going to go see a migraine specialist for a proper diagnosis because my eye doctor told me they are from my eye (retinal) but I see them in both eyes and retinal migraine occurs in only one eye and always with a headache, which luckily I don't get....

        1. Sounds good. Let us know how that goes. Also, I see that my links didn't get sent properly- I was intending to send you info on ocular migraine as well- here those are, in case you're interested:

          Thinking of you-
          Holly ( team).

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